A-Z

Experiences of Covid-19 and Intensive Care

Sources of support after coming out of hospital

On this page people who have been critically ill with Covid and their family members talk about:

  • professional support patients received after discharge
  • support they received from family members and friends after discharge

See for family members’ experiences of sources of support ‘Sources of support for family members’.

Professional support after discharge

Post-ICU (Intensive Care Unit) support during the pandemic was compromised.

 

When are patients discharged from intensive care and how do intensive care staff stay involved in their aftercare?

When are patients discharged from intensive care and how do intensive care staff stay involved in their aftercare?

SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

So, a patient's discharge from intensive care when we believe they're well enough to be safely and well cared for on a standard hospital ward. They must be free from any of the high-tech technologies that we use, such as ventilators or drugs to maintain blood pressure. They must be free from the need to have special additional monitoring, so heart rate or blood oxygen levels and so on and so on. So that's the first big thing, but also, they've got to be free from the need to have intensive nursing and that ability to just sit themselves up well to get out of bed and so on are quite crucial to be able to deliver some self-care in the ward environment to maybe help with washing themselves. Because there are far fewer nurses on a on a standard ward and so patients need to be much more self-caring. In intensive care we literally do everything for them every single thing that you might do in your day, from the moment you wake up to washing, eating, drinking, going to the toilet, how you sit in the bed or sit in a chair. Everything of those things that you do for yourself, nursing staff do for our patients in intensive care. And so that's quite a big step down from an intensive care to a ward, and that's often quite a scary transition for patients and their families, because they they're so well supported and so well looked after and it's quite a big difference in the ward environment. And we need to make sure that transition is safe, but also not too frightening.

I think after ICU, obviously we're transferring care to a ward-based team. Ward based doctors and nurses who who've got a different type of training and a different approach to patient care. But we do see a small number of our patients that, the sickest patients in follow-up clinics after they've gone home, to help them understand the experience they had in intensive care, to make sure any problems that they may still have, physical problems that they may still have, that specifically related to the way we looked after them in intensive care: Tracheostomies for example, when you put the breathing tube in your neck, sometimes have ongoing problems that we need to solve. And we have special intensive care follow-up clinics to deal with all of those problems afterwards.

And was that in any way different during the pandemic; were there challenges...?

Well, a lot of that didn't really happen. And the two main reasons why it didn't happen were firstly the vast number of patients who came to intensive care and secondly the fact that most outpatient clinic appointments were being delivered online rather than in person, and it's the type of support that's very difficult to deliver online because you need to examine the patient as part of, you know, that clinic visit.

 

Mike phoned the GP and physio when there was no follow-up support for Veronica for weeks after her hospital discharge.

Mike phoned the GP and physio when there was no follow-up support for Veronica for weeks after her hospital discharge.

SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

Are you alright speaking a little bit more about when Veronica came home, and you said the first month there wasn’t any care?

None at all. Doctor, nothing.

So, can you talk about where you went to seek support and what that looks like?

Well, we were told that the doctor would be contacting us from when she returned home from hospital, but somehow, something... They’d keep an eye on her and all the necessary letters were sent from the hospital to the surgery. And it wasn’t until... Important to me was the physio. She needed to keep that sustained. That needed to continue because, you know, she needed professional support for that. I’m not very good at that sort of thing. I could get up and walk anywhere, but she needed the proper exercises. And after about four weeks, I was getting a bit frustrated that no one had turned up. So, we were given these phone numbers to call in the lists that came home. So, after four weeks, I rang the GP surgery and said that, you know, Veronica’s been home, and no one’s come and seen her or checked her medication.

You know, because she was on so much medication when she came home. Do we need to continue with this after a month? We made the call, I made the phone call and then the doctor rang back and said, oh, yes, I’ve got all the notes in front of me, we are aware of her. I thought, well, that’s encouraging. He said, I’ll send a district nurse out or a nurse from the... No, it was a nurse from the surgery, sorry. And a nurse came out, spent an hour with Veronica, discussed everything and we went through everything, but never happened again. Nothing. Nothing at all. And then of course the physio... I rang up the number that I was given for the physio and got no reply for a week. I had to leave a message on an answer phone. Got no reply and I rang back. They said, oh, messages got deleted. I said, well, you know, my wife’s been at home for a month now, she’s receiving no physical support from a physio or anything.

Oh, right. we’ll look into that then. Then the district nurse came out and assessed her. It was at that time she was issued with some equipment to help us around the home from OT. And then you’re on the list to have a visit from physio, and that occurred about another two weeks later. So, we were about six weeks in before we got any real support, really. But then, you know, I’m a determined so and so and I did what I could for her, you know.

How were you feeling about that at the time?

I was frustrated, yes, and angry. Very. I was angry. I was frustrated and angry for her because she was just forgotten about. She was four months out of intensive care and the GP couldn’t even call, couldn’t even make a phone call. And I find that disappointing to put it mildly. Very disappointed. And I felt disappointed that the communication between her leaving the hospital physio department and being put onto whatever you call it on the outside, there’s no cohesion there. You know, it should have automatically been passed on and carried on. Not just, oh, forgotten about. We are aware of you. Well, I don’t know.

Health care services faced at least two issues. Firstly, as Covid emerged in early 2020, there were high levels of uncertainty, and sometimes disagreement, about the way the virus spread, and the most effective ways to prevent and treat infections. Little was known about the numerous effects that a Covid infection can have, and what the needs (particularly long-term needs) of people who had been critically ill with Covid and their family members would be. Health services did not initially know what kind of follow-up and support patients and family members would need, and who would be best equipped and responsible to provide this care.

Secondly, the sheer number of Covid patients overwhelmed the very support structures that people rely on for help. Many patients faced ongoing side-effects of their Covid infection and ICU admission, including physical weakness that took a long time to improve, and a degree of permanent lung damage and cognitive deficits much like other ICU survivors. Hospitals cancelled and delayed the delivery of routine care. It was difficult to provide timely care and support amidst ongoing public health restrictions, including lockdowns and social distancing, and with a significant number of staff of community and outpatient services were redeployed to support acute service delivery.

A Covid infection can have numerous effects, that multidisciplinary health care teams and scientists are still learning about as people report their experiences. Patients who have been in ICU with Covid are likely to have long-term care needs related to muscle weakness and psychological and cognitive issues. Clinical staff expect that Covid patients will also have issues with their lung and kidney function, and with their shoulders due to proning, and cognitive issues due to the high incidence of delirium.* It is also clear that many patients who were awake in ICU struggle with the effects of having witnessed suffering and deaths of other patients (see also ‘Uncertain survival’).

Experiences with professional support after discharge

Many people we spoke to had some support from a multidisciplinary range of health care professionals after they came home from hospital; including follow-up from ICU and other medical specialties, district nurses, GPs, physiotherapists and speech and language therapists.

 

Johnny had online support from the neuro rehabilitation specialist.

Johnny had online support from the neuro rehabilitation specialist.

SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

You mentioned some support that you received since you came home, so the physiotherapist… Have you had any other support from the NHS?

Well, it’s only the official policy include also the neuro rehab in preparation for my going back to normal life, like more working back, and yeah, they tested me whether I’m ready to go back to work. They gave me some tests, my mind and everything, my thinking. I don’t know what’s the result, but they thought maybe I could do it fast because they ask me some questions and then do these things, like puzzles, they are testing whether I know how to solve these things. That’s it. I was able to do it. They even ask me can you give some words that begin with this letter, as much as you can? Well, I give more than they ask for me, I think. For example, give me as much as you can in one-minute words that begin with D. Okay, driver, dog, department, everything like that.

So, the neuro rehab and the physiotherapist.

Yes.

And the neuro rehab, was that online?

Yeah, it’s online, but they also ask me to go in person because I have to sit just like an exam. They did some figures, okay, do this and what does this need to be done, and then they show me some pictures and how much you can remember, what have I shown you, and can you repeat this, like that.

It is clear that the extent to which people could access support after their discharge from critical care with Covid varied greatly (although these differences between areas of service delivery are not necessarily new). Some patients did not receive the follow-up care they felt they needed, many family members felt alone and helpless in the absence of formal support.

 

Stephanie felt that the medical follow-up had been poor, and that this resulted in unnecessary pain and discomfort for Peter.

Stephanie felt that the medical follow-up had been poor, and that this resulted in unnecessary pain and discomfort for Peter.

SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

I think as far as follow ups been concerned as far as follow ups have been concerned that was, it was absolutely brilliant rehab as far as his hand has been concerned has been very, very good my only disappointment has been the medical follow up which has been extremely poor. Whilst he was in hospital, I honestly cannot fault the care that he received really can’t but after, he’d been home for about a month and he’d had not heard from the GP we’d not heard from the hospital, no medical follow up whatsoever, so I actually took him to the GP his ankles were really swollen and he was improving but obviously he was still very symptomatic in one way or another. So I actually took him to the GP who wasn’t very knowledgeable about the whole situation and sort of said well, you know, do you think we should be given this, that and the other so the follow up is probably maybe only because I’d taken him to that GP appointment and suggested different things and at that it was sort of like a bit of a chain reaction and then because I’d said well I think we should do an echo then from on the back of the results if that, you know, he had the follow up she’s got a cardiology follow up now and he’s actually on home oxygen now just PRN which he’s not had to use that much but there’s [audio cuts out] came after he’d been home form hospital for five months and so, you know, although I haven’t complained because obviously the health service have saved his life and I’m under no illusions that that’s that case but it’s things like the home oxygen assessment, that should have been done in my mind on discharge from hospital, not five months afterwards. And he was suffering from a lot of muscle pain in the months after he was discharged from hospital and as soon as he started on the oxygen therapy that went completely, so you know, there’s, there are a few issues that I think probably could have been ironed out, you know and luckily the occupational therapists that are doing his hand therapy she belongs to part of a multidisciplinary group a Covid follow up group so she’s been feeding back all the all the information that I’ve been giving her and as I said to her it’s not a complaint it’s the fact that it may help other people that are not in the situation where they’ve got somebody that works in healthcare within with them that can push things forward so hopefully that will help. So yeah, that’s about where we’re up to at the minutes I think, as I say there are other things that have cropped up and other issues along the way but that’s basically it in a nutshell because it’s quite prolonged [laughter].

In the clip above, Stephanie, whose husband Peter was in hospital for 4 months in the autumn of 2020 said: “I just felt like as soon as [Peter] was discharged from hospital they just dropped him and forgot about him.” Like many others, Peter understood the pressures the health system was under. Responding to Stephanie’s observation he said: “I think you’ve got to look at the whole picture … if these departments normally see about ten patients a day they might have had a waiting list of a 100 a day and I think you’ve gotta look at it and think you can’t get to everyone and somebody is gonna slip through the net [like] I did … But that was [in the] second wave, and it was like it was like thousands were dying a day and the hospital was absolutely rammed with patients with Covid… and, you know, so many people come [and there’s only] so many NHS workers to look after those people.” However, understanding why care was compromised, like Peter did, did not take away from the reality that many were left without appropriate support once they got home. While some family members were able to advocate and/or paid for additional help on a loved one’s behalf, not every patient could rely on somebody to do this for them.

Some patients who could have benefited from more support found it difficult to ask for help. People we spoke to were often grateful to be alive at all and they realised how busy health care providers were. For some this seemed to make having compassion for themselves harder.

 

Carl had support from various health care professionals. Initially, he was mostly happy to be alive. When one symptom alleviated, he could tend to another.

Carl had support from various health care professionals. Initially, he was mostly happy to be alive. When one symptom alleviated, he could tend to another.

Age at interview: 50
Sex: Male
Age at diagnosis: 50
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

Did you have any support at that time from clinical services?

Yeah, the GPs were phoning me up. Slowly bit by bit. I think the speech therapist was talking to me. There were various different people talking to me. It did feel like there were a lot of people from the NHS that were concerned.

But at the same time obviously you can’t, they’d given me loads, I was still on antibiotics for my lungs, and I had a load of pills and stuff to take, and they were making sure that I was doing everything correctly and stuff. But in a normal world they’d have come and seen you or somebody would have come and seen you, but you couldn’t have that. To be honest with you I looked forward to the hospital appointments because, again, you were talking to somebody and that was quite good really. Because talking to somebody on the phone is okay but it’s nothing like actually seeing somebody.

I think I didn’t really know what to expect. When I came out of hospital, I was still on the thing of just pleased to be alive, and I didn’t really care about, like both my feet were black, just completely black, and my right foot healed and my left foot had this massive pressure sore on the bottom of my heel that took months and months, probably six months to heal. It’s healed but it still doesn’t look 100 per cent. But was that bothering me; it was really uncomfortable to walk on and I was struggling to walk on, but that wasn’t my main concern. And my hand where I’d go the nerve damage and stuff, again my main concern was just being alive. I was just in more of a happy to be home, happy to be alive. And all the other things, my throat was still a bit sore, I couldn’t eat potatoes or biscuits or anything like that, anything that could get stuck in my throat wouldn’t go down, but that didn’t matter.

But then slowly bit by bit, which I’m still doing now, I was on the phone to the GP last week and actually even yesterday about my legs. I still get around but just they get tightness in the muscles and things. And I said to her it’s just been bit by bit, things come to more of a light because other things have healed, and these things are what are left.

ICU follow-up appointments

Many of the people we spoke to had ICU follow-up appointments, which generally took the form of online meetings, during which one clinician or a multidisciplinary team of clinicians talked the patient (and, if relevant, those close to them) through what had happened to them, and answered any questions they may have. For some, this meeting came several weeks or even months after their discharge, possibly because follow-up services across the country were short on staff during the first wave, and therefore temporarily suspended. Follow-up meetings were generally greatly appreciated by patients, as was the offer to call if there were any questions or queries.

District nurses, occupational health practitioners and physiotherapists

District nurses, occupational health practitioners and physiotherapists came to people’s homes to support them in their recovery. For specific concerns and symptoms, some were referred to (online) check-ups with specialists, including speech therapists, neuro rehabilitation specialists, a respiratory specialist, a kidney specialist (nephrologist), blood specialist (haematologists) or heart specialist (cardiologist). As Covid and long Covid are still relatively new conditions, when consulted, these specialists did not always have all the answers.

General practitioners (GPs)

General Practitioners (GPs) were under immense pressure due to the effects of the Covid pandemic and later also the delivery of the vaccination programme. Some were felt to be helpful but others did not always have the knowledge required to help. GPs should be informed when one of their patients is discharged from hospital. Some recommended approaching the GP straightaway if symptoms arose or continued, rather than wait for the GP to contact them. Some GPs proactively got in touch with their patients. Patients appreciated help with their ongoing breathlessness and had an eye for how the patient and family members were doing in terms of their mental health.

Support groups

Support groups were available to only a few people we spoke to. They were held online. Interestingly, because these were online, they now also provided access to ICU patients who previously had been unable to attend due to physical or geographical barriers.

Other source of support

Those that had suffered other conditions in addition to Covid could benefit from the use of existing care infrastructures not available to others. It has been argued that support structures such as the one available for stroke patients should be replicated for Covid patients and family members.*

 

Had the stroke charity not offered any physical recovery to Steven, he would have waited 9 or 10 months for it. He felt connected through online chats with friends abroad.

Had the stroke charity not offered any physical recovery to Steven, he would have waited 9 or 10 months for it. He felt connected through online chats with friends abroad.

SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

I was particularly lucky, I think. I came out of hospital, and I was told this is your physical recovery programme, and I thought this is great, fantastic. I originally had something like between six and eight hours a week online with actually some really, well I knew them, some very senior sports people running these classes, so it was brilliant stuff. And it was only halfway through that I realised this wasn’t being produced by the NHS; this was by the charity [name charity]. And actually, if I had waited for the NHS, I mentioned earlier that I had a cognitive test, the cognitive test was done nine, ten months after my strokes, whereas the one done thanks for the charity was done a couple of months after the strokes. And so, I was lucky.

And then through that group of people who were doing online gym we’ve set up an online group, we chat, we talk. And so even though I was locked down from talking to other people I had this new group of people I could talk to very clearly about these things.

Plus the other thing is that because of what I did engaging with people online was not a new thing and was not a barrier. And because I have international friends actually that’s the way I would have talked to them anyway. So, in some cases I’ve been having more regular talks for example with my friends in Chile, my friends in Canada. But I think I am unusual because my group of friends is international, literate in terms of using Zoom and different things like that, and until very recently I was able to go out and go out and swim outdoors with my friends, not physically close, but we were close enough. We’d be 2m, 3m or 4m apart but we could chat in a group in the open air. That’s now stopped, and I find that difficult.

But I think I was an unusual case in that a lot of my – okay I couldn’t go to a restaurant, I couldn’t go to a film, I couldn’t go to the theatre, fine – but I could still have conversations with my friends all round the world. And again, I was lucky because my friends were concerned about me, so they were getting in touch with me. And so, I think I was perhaps non-standard in that the amount of social interaction I had with people has almost increased as a result of Covid. But I think a lot of the people that I talk to it’s been exactly the opposite and they’ve felt very isolated.

Despite the many challenges that Covid posed for the provision of health services, many people we spoke to felt supported. Each person for whom this is the case is a major achievement of the pressured healthcare services.

 

Deborah and her family felt well supported by their GP, district nurses and a physiotherapist after Shaun came home. Deborah also finds it helpful that more is known now about Covid, as people thinking it is like the flu was painful.

Deborah and her family felt well supported by their GP, district nurses and a physiotherapist after Shaun came home. Deborah also finds it helpful that more is known now about Covid, as people thinking it is like the flu was painful.

Age at interview: 54
Sex: Female
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

But actually, one thing that we found is as a family, it took us a lot, I think we’re all suffering from Post-Traumatic Stress Disorder [PTSD], and it took us a long time to cope with that, and we all had help getting over that situation, which was very important.

But for my husband, he had absolutely no recollection of anything that had happened to him, apart from his dreams that he had, his hallucinations, which he would all of a sudden, every now and again, he’d be like, oh my gosh, I’ve just remembered that hallucination and what it meant. And they were unbelievable hallucinations. And I said to him, did you ever have a dream or anything about the family? And he said, no, never. But I think the only thing that struck him afterwards, was the fact that if he had passed away, he would never have known anything, and I think that took him a while to get his head around that. So, I think, you know, once the physical side of what happens, you can come to terms with a lot quicker, ‘cause you can see you’re getting better, it’s the psychological side of it. But we had great support from our GP who would ring me, and when she found out he was coming home, she was in tears on the phone to me, ‘cause she’d been so supportive towards him when he was going through is cancer, ‘cause she spotted that he had cancer, so he had all the typical signs, and she said she knew straightaway, before he even had a blood test, that there was something wrong, and it could be this, that and the other.

So, she would ring me while he was in hospital to ask me, ‘cause the communication between hospitals and the GPs, the GP only gets to know what’s going on once someone’s being discharged from hospital, so she used to ring me for an update on Shaun, and sometimes she was more emotional than me.

But we were very well supported and even, you know, when he came home because we were on lockdown, the district nurses were unbelievable and they referred him to the physios to get to get extra help, and we did actually have a community physio come out and assess him every week and help him, so yeah, I think we’ve had enough health issues for a while, to keep us going really, but we’re very lucky, he’s a lucky chap and we’re all lucky to have him. But it’s good to see that now people understand a lot more about what Covid-19 is and it’s not just flu, ‘cause I think when my husband was really, really ill, it was difficult, because we could see our neighbours, we’d recently moved, so we didn’t know very many people, but we could see some of our neighbours behaving in a way that we felt was incorrect, and it was very difficult for us because we were going through the worst trauma in the world, and yet you could see people around you, even the doctor from the Intensive Care said, I don’t know where everybody’s going, why are there people on the streets in their cars? Everyone should be at home. Do they not know what’s going on here?

Informal support after discharge

Family members were key to informal support for many of the people we spoke to (see also ‘First weeks at home’, ‘Doing the work of recovery’ and ‘Coming to terms with what happened and long term effects’).

After discharge from hospital, family members became carers. Many provided care and support with everyday tasks, such as showering, dressing, shopping, cooking, cleaning and praying (see also ‘First weeks at home’). Outside support was often not readily available. This meant that those who lived with the person who just came out of hospital took up more care than they would have needed outside of the pandemic.

For some family members, “being able to finally do something” contributed to their own process of recovery. For others, tensions emerged from this new carer role in the absence of guidance on how best to manage this transition. Because he had suffered a stroke whilst in hospital with Covid, Steven’s family could make use of their longstanding support group to access support. But he felt there was a lack of advice: “Government communications [are] just telling you how not to get Covid, it doesn’t tell you what to do if your husband has had Covid and he’s come home and he’s trying to get over it.”

 

Steven’s family could access support through a stroke charity, but he worries about the tensions that arise from the changes brought about by his stroke.

Steven’s family could access support through a stroke charity, but he worries about the tensions that arise from the changes brought about by his stroke.

SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

At a number of points in this conversation we’ve mentioned your family members. Do you talk to them about what this was like for them?

Yes, I have. It’s not always easy to talk to them about what this has been like for them for several reasons: one the fact that for some of the period when I was most ill, apparently, I was having conversations with them but I wasn’t making much sense. And they were not allowed to see me. And at one point they were told by the doctors, or they understood very clearly that the doctors didn’t think I was going to survive. So, in many ways they suffered mentally more than I did. And we’ve talked a bit about it, but I think it is difficult for them to talk about what they feel about the experience when they’re aware that I am recovering, and I went through a different experience. So, they have been hugely supportive, immensely supportive, but I think it has been a heavy burden on them.

Yes. So, there are almost two different stories?

Two completely different stories, made even more different by the fact they couldn’t come in. At one point my wife threatened to camp outside the hospital so they would let her in, and she wasn’t allowed. I think rightly. But the difficulty for them was literally they saw me walk into hospital, stride into hospital, and the next thing is three weeks later they’re told, you husband may die. You haven’t been able to see them; well can I see him now. No, you can’t, we don’t know what’s going to happen. And I think the emotional effect on the family was intense. And in a way that is ignored; they were not offered any support.

And again, [name charity] was the only person who offered them any support. [name charity] set up just a very simple online chat group of relatives, partners and relatives of people who had suffered these strokes, and I know a lot of people felt it was very helpful. I haven’t asked detailed questions because I think that’s inappropriate, but I know a lot of people found it tremendously helpful. But they received, other than that, no help, yet they were the ones, they were quite often the principal carers, they were having to deal with the shock of having a close family member very ill, then being told in some cases their husband may well die, then being told actually he’s all right but he’s not really all right.

And also, I think it was the fact that nobody sat down with them – I’m not saying they should have done – but nobody sat down and said, this is what’s wrong with your husband or this is what’s wrong with your wife. And so, they’ve had to find out for themselves what’s wrong. And there’s no real help to say, look, this is normal or… [Inaudible due to poor internet connection] So, that has created, certainly with me and my wife, tensions. Again, because I don’t look different, so I might be saying something and my wife will be saying, but hold on a minute, you never used to deal with things like that. And I’m thinking, I’m not doing anything different. It takes an awful lot of effort to work out whether I’m doing things differently because of the strokes, I’m doing things differently because I’m at home and not at work, I’m doing things differently because I’m not hearing things in the same way. And in fact, in our case, we have hired a psychologist to work with us privately to try and get through some of these issues because they’re very difficult.

So, I think there’s been no support for the families. And if you look at government communications it’s just telling you how not to get Covid, it doesn’t tell you what to do if your husband has had Covid and he’s come home and he’s trying to get over it. Are you supposed to suddenly discover what it is to be a carer, to understand what may well have happened in terms of the cognitive changes that have gone on? I think it’s very difficult.

And what about the children who have no support and yet are dealing with people, their parents, their grandparents who may be very ill and they die, or may be very ill, and they’re just sort of oh yeah, here’s your grandad, he didn’t die, he’s a bit weird now, but he’s all right. And to have a three-year-old explain why social distancing is important really worries me. What is that going to do with them for the rest of their lives?

 

Moazzam’s entire family came together to help him after hospital discharge. His mother found new strength in her legs taking care of her son.

Text only
Read below

Moazzam’s entire family came together to help him after hospital discharge. His mother found new strength in her legs taking care of her son.

HIDE TEXT
PRINT TRANSCRIPT

How are you? I have been hearing great things about you.

Alhamdulillah, all good things are because of Allah, son, we aren’t worth much, son.

And making Dua and prayers is most of what we can do. And I was told its by your Duas that he was able to get back into good health?

Allah wanted to give him good health. I know, a mother’s Dua holds weight, is very valuable, but whoever is wanted by Allah, goes. There must be so many mothers like me whose heads have been on the floor crying and have must have finally gone quiet. How many young kids have gone, I just can’t believe it, son? It pains me so much hearing about them, seeing them, thinking about them.

Absolutely, absolutely. I also heard that after his coming home, you got on your feet, got moving around the house, and had a newfound strength in you?

Yes, son. His father passed away last year, in January. He was also bedridden for 3 and a half years. So, I would be busy with him, my daughter was with him too, there was a carer who came about three times as well. There was so much work to do around him that I wouldn’t be able to sit. I would just be around him all the time, so I was fine. Even with a stick I used to walk, but still I used to manage him. After his death, I sat down so much, I would get up and then sit in bed, and then in the bathroom. That became my daily routine. After his coming home, he keeps saying to me Mom, sit down, sit down. I say [name participant], because of your coming I’ve actually started moving, Allah has given me strength in my legs, so now I’m out and about. Don’t stop me, I used to be getting jammed.

Subhanallah. Tell me, in your own words, when he came back from the ambulance, and then now when he has sat with me and talked with me for so long, tell me in your words, what did you do for him and for his recovery?

Son, even now, I can only make Dua for him. I can’t do much for him because I am disabled myself. But, alhamdulillah, I can walk with a stick, but the care for him, the most was done by his niece and nephews, and his sister-in-law, she was the one cooking for him, she was the one that took care of him. She had the household duties on her shoulders, her own 4 kids, even with the youngest being 3 years old. But she really helped so much. She did most of the care, son, not me. I just made sure he kept getting his medicines. I give him his medicines; I didn’t put that responsibility on anyone else. Insulin I give him myself. That work I didn’t trust to anyone else. She had so many things on her plate as it was. She could have forgotten something. Like even today, I need to give him his drops. Have you taken your drops? No? I have to still give him his drops today, I woke up a bit late. He says he still hasn’t had his drops. The entire family came together to help him. One nephew helps him exercise, nowadays he gives him a lot of time, he sits with him. The younger one massages him. The brothers take him to the bathroom together. The keep an eye on his food and drink. They sit around him, so he doesn’t feel lonely. He has 4 kids of his own, the youngest is 2 years old. And when he was in that state that he didn’t have consciousness, that little kid would say Daddy I love you. And I wanted to cry so much then, I would feel so much pain. Like what was the child feeling then, Daddy I love you. And one kid of his, 8 years old, saw him once in picture with the machines attached. That kid wouldn’t even come out anymore. Only asking what happened to my daddy? So, the entire family felt pain, gone through pain. Every single one.

Some family members could provide additional help if they had medical training, or could share knowledge about how they dealt with health conditions of their own. This was particularly important for patients who received little or no professional help.

 

Andrew’s mother-in-law is a sports physio. She helped him go through various breathing exercises when no physiotherapy was available to him.

Andrew’s mother-in-law is a sports physio. She helped him go through various breathing exercises when no physiotherapy was available to him.

SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

So, transition out of hospital into the community that was certainly much more of a jump where I guess in the hospital system you certainly felt very, I guess, look after, suddenly I think...yeah, back home then I think that the support level dropped off quite a bit.

So, I think the...for me some of the biggest things was really the level of physio support, working out how to get better, because you want to get better and, of course, you're discharged enough to walk around and things but really...and you've come down with Covid so it's a lung side of things. So, you would have thought or hoped that you would have some continued physio exercises around building up lung capacity, all of that type of thing. But that didn't really happen.

So there was a little bit of handover, well, the local physio was more around mobility and I think it felt that it was more aimed at the more elderly side of the spectrum and making sure that they were just getting enough mobility that they could move around a bit and weren't...enough that they were mobile as opposed to working out how to get you back to the same level of capacity, capability that you were before.

Fortunately, my mother-in-law is a sports physio, so she was able to...we were able to go through various breathing exercises, lung exercises, which I think helped me, yeah, definitely helped me a lot and meant that my recovery and lung capacity went back very quickly. But if I didn't have that then I wouldn't be doing any exercises at home on breathing, it would all been about getting my ankles working. So, I think that was a... I felt that that was a missed opportunity.

I think at some point the system, the hospital system, did catch me again in that did get invited to...so I think when the Covid...I think had a conversation with one of the...when I came back for some checks up and then they did mention this and then they referred me to the Covid clinic at which point I could have more of these conversations. But at this point I was actually getting much better, this was a couple of months down the line and actually I'd already made big improvements so the Covid clinic probably helped less at that point than it could have if I went right at the beginning.

But I have a feeling the Covid clinics weren't really set up until afterwards because I was one of the earlier phases and then they got going for people who got sick after me.

Yes, this is definitely a feature of these very early admissions sometimes in hospital, yeah. But, yeah, nevertheless it meant that you were virtually without any support at home in the initial month?

Yeah, it was definitely, definitely the case, I think we had people come around and look at my ankles and then did these exercises and then I think that was the point it was a physio, and then the next time around was a physio's assistant.

So, I said, well, I can do these exercises, can you give me something else? And he's like, well, I can't because I'm not the physio, so I'm not allowed to give you any other exercise. Oh, okay, well, can we arrange with the physio to get on with it. And then another month or so later someone comes and so on the one front that is positive in the fact that by then I think things were improved significantly so maybe they didn't...maybe from a resource perspective it was that they use their resources well in that they didn't need to spend any time on me. But at the same time there could have been opportunities, better opportunities.

 

Michael’s sister shared with him on how to live with fatigue based on her experiences with fibromyalgia.

Michael’s sister shared with him on how to live with fatigue based on her experiences with fibromyalgia.

SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

So, after I came out of hospital, I was given a walking stick and told that it would be best for me to use it because I still had a very poor sense of balance. So initially for the first few days I continued getting stronger and stronger, and everything I was told that would take months I was literally doing it within days.

And then after about two weeks things started to slow down and had started almost like I was backpedalling, I was getting worse and worse. And I would say it’s pretty much been the same for me since then. Some days, or even some weeks I’m making good progress, for example, I’m not sure if I’ve mentioned it when you had phoned me before, but I decided personally that I would just take myself away for a few days, and I booked into a local Premier Inn type of hotel.

And rather than it being a break for me, I actually got worse and spent most of my time just in bed trying to fight the fatigue. And by the time I got home my breathing got so bad that it was like I had Covid all over again, so I had to send away for a test. And thankfully it was negative.

So, as I said, some weeks, or even days, are good, and other times it’s almost like I’m back to the beginning again.

Is that something that you feel that people understand? Or is it hard for others to grasp?

As I said, my family understand. But I’m sure at some point I’m going to speak to somebody that will almost be convinced that it’s all in the mind and just get a plan to do some work for a change. I know my sister, she suffers from fibromyalgia and chronic fatigue, and that’s very close to the same symptoms as long Covid. So, she has been very helpful in being able to tell me what to expect and how to deal with those times when you’re very under the weather.

Some family members could help each other because they had been through a similar experience. This was the case for Royston and his two grandsons.

 

Royston and two of his grandsons had all been in hospital; after coming home, they talked about their experiences and supported each other in going back to work.

Royston and two of his grandsons had all been in hospital; after coming home, they talked about their experiences and supported each other in going back to work.

Age at interview: 77
Sex: Male
Age at diagnosis: 77
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

So, you’ve had two grandsons in hospital, as well as your wife. So, do all of you speak about your experiences in hospital?

Yes. Yeah, my wife and I refer from time to time, you know, things come up. The elder of the two grandsons and I, we’re now getting back to business, if I can put it that way. But initially, let’s face it, it was back in January we came out, so February, March, a couple of months, we communicated at least once a day, checking on each other, how do you feel today, et cetera, et cetera. And when one of us had a letter or a call or something, the other one knew about it. So, we kept like that. Hence, I told him that I was going to be talking to you and he then told me that he had had an email from you because you’d had problems making telephone contact with him.

So yeah, no, we talked everything, you know. Things happened to both of us, you know, like a bruise appears on his leg, is it because he was manhandled, who knows. But I’m just saying that it’s just one thing…the other thing that sort of came to mind. But we talk to each other about how we feel, and we can understand what we’re talking about because we’ve both been through it identically. It's probably silly to say, but the younger grandson who went straight to the respiratory ward, he doesn’t quite have the same understanding because he hasn’t been through what two of us went through. And in a way, it’s almost a pity, it would be better if we could all talk three equally. But we involve him as much as we can and try and educate him.

But yes, we do talk. And we’re now trying to, as I say, more of the conversation is now work, because they’re trying to do a bit. But we have found that, you know, you have to take it very steady because you can go and do a few hours on something and then, my goodness, do you pay for it, you know, because your body’s just not up to it yet. You think you feel alright but you’re not really.

The support from close friends, neighbours and sometimes strangers was also very important for people after returning home from hospital.

 

Zoe was blown away by the kindness that she encountered following her hospital admission.

Zoe was blown away by the kindness that she encountered following her hospital admission.

Age at interview: 46
Sex: Female
Age at diagnosis: 45
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

And I think it’s also shown me, people have been so kind to me, and that’s really kind of blown me away. I mean, people are kind anyway, I think. I live in a nice neighbourhood, the NHS and have amazing staff. I have nice friends and family, and a good support system, but I think people’s kindness, just with strangers, my bin men are always asking how I’m doing, you know, the people at the paper shop, the dry cleaners, people have really blown me away with their kindness.

Was this specifically in relation to your Covid, that they’ve asked, yeah?

Aha. I mean I think I’ve always had like a good connection with people, neighbours and people in my neighbourhood anyway, but I think the fact that people always remember, they ask how I’m doing, how I am, yeah, it really has, really, really touched me. I mean, sometimes it makes you cry, so it touches you in that way, where you end up crying, and you’re just trying to pick up your coat from the dry cleaners. But it’s kind of knowing that people care, and people that you don’t necessarily have a very personal connection with them, but they still take the time out to ask how you are, and how is your progress, and how are you doing, and…? I mean, people would often ask me quite detailed questions about what it was like to be in ITU, which I found quite difficult initially to talk about, but I think they just, they asked in a caring way, not necessarily in an – you know - invasive way. And sometimes we had cards dropped through the door, and I didn’t know the name of the person. I thought, my God, I’m going not see them, and I’m not even going to say like, thanks for the card, ‘cause I don’t know who it was anyway that had dropped the card through. So, you know, people have been so kind.

 

Carl remembered a huge outpouring of support from fellow villagers when he came home from hospital in the summer of 2020.

Text only
Read below

Carl remembered a huge outpouring of support from fellow villagers when he came home from hospital in the summer of 2020.

Age at interview: 50
Sex: Male
Age at diagnosis: 50
HIDE TEXT
PRINT TRANSCRIPT

But the whole experience has been very strange. I came home and the outpour from people have been lovely; the village I live in people were absolutely pouring out of their houses to talk to me and wish me well. Literally every single person in the village has some point has wished me well and things, people from work, just masses and masses of people just wishing me well and stuff. The outpour has been huge, just absolutely ginormous, which gives you so much strength. It makes a huge difference. But it does feel weird because it’s only probably now when more people are getting it that it feels a little bit different. Back in May, June nobody had met anybody that had had the virus really, let alone anybody that had had it bad. And even now when I talk to anybody still people don’t really know anybody that’s had it badly. Even though the cases are going up and up and up, but you feel a bit like a celebrity in a way, which is a bit weird. A celebrity for the wrong reasons.

Some people joined an online support group. Neil benefited a lot from the support this group offered, as it helped him to accept bad days and realise that he was not the only one struggling. Some who had been critically ill early on in the pandemic were invited join a group once they were established. Some found this helpful, whilst others felt it came too late for them to make a difference.

 

Neil joined a support group of people who had also had Covid and had been mechanically ventilated.

Neil joined a support group of people who had also had Covid and had been mechanically ventilated.

SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

We have a support group for like-minded patients…like-minded? Similar situation patients who have had Covid and ended up on a ventilator, and that’s helped, that’s been a great help because it’s sharing your experience, like we are now, with people who’ve had the same thing. And you feel that you’re isolated and so, I’ve got this wrong with me, and they’ll say, well, hang on, I’ve got that…I had that. You’re not the only one who’s had these problems. And I’ve been able to share common symptoms/problems and it was such a help.

And I’m just a bit…it’s unlucky they’ve changed the days from a Monday to a Wednesday, and I work every other Wednesday and it seems to clash when I work, so I haven’t seen any of the group for four or five months now. And they call me the…what was it? Hmm, not focal point…what was it? Oh, de de de de…not hero… I can’t think of it. This is the other thing with Covid – my memory sometimes goes. Well, I’m like an example – that’s not the word she used – because I seem to recover a lot quicker than some of the other people on there.

I was lucky, just lucky that I have, and I’m back at work full-time and I have been for a couple of months now. But the people in the group said, we look at you and you show us where we can get to, and you are…I can’t think of the word, but it will come to me, but they…I…they appreciate that it takes different lengths of time for different people, but they know that they will eventually get better.

It’s like an inspiration?

That’s it, that’s the word, I’m an inspiration. And I said, I never ever wanted to be…I’ve never attempted to be an inspiration for anybody, but if I have inspired you, well, that’s great. And that’s the word, she said, you are my inspiration. I was nearly crying. When you’ve been talking to people for six/seven/eight months you do get an emotional…even though it’s over Zoom like this, you do get an emotional bond, and I miss them, I miss the group, I miss having a chat with them, so...

But it was such a positive experience of being able to share your issues, and just to say to people, it’s not wrong, it’s not…if you’re having a bad day, you’re having a bad day – it’s not wrong to feel down. We’ve all had good days and bad days, but the good days are more than the bad days. And you just accept that you will sometimes wake up and feel really, really tired, you can’t do it, you can’t do what you normally can, but it’s what we’re all going through, and it’s just that bonding and moral support that you’re not the only ones in this boat.

Several people found social media helpful to share their experiences and to learn from others. However, the same platforms could also be a source of negativity; in some of the comments the existence or severity of Covid was contested. Some patients left or stayed away from online platforms. While this allowed them to regain their peace of mind, it did cut them off from the possibility of sharing and learning from the experiences with others.

 

Paul stopped visiting Facebook to share his experiences, because he found the negative content too draining.

Paul stopped visiting Facebook to share his experiences, because he found the negative content too draining.

SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

I was in a Facebook group for long Covid and I was sharing my experiences with that, but I came off Facebook on Christmas day because there was too many negative comments on Facebook. Not from the Covid group, but other Covid deniers, and I was getting into arguments, and the psychiatrist says, Paul, that will bring you down, that’s too much negativity, you need to stay positive, and if it means coming off then that’s the right thing to do. So, I came off. My wife came off Facebook about November, a month or two before me, and she says, it’s a great sense of relief that you didn’t have to put up with all the rubbish and the people wanting attention and posting controversial stuff just to… So, I don’t miss any of that. It’s great to be off Facebook. That was another part of my recovery, getting off that and seeing less negative things and putting up with arguing with people because they think Covid’s a hoax and stuff like that. It gets you really annoyed. But I’m over that now I don’t have to see things like that.

 

* Support and follow-up needs of patients discharged from intensive care after severe COVID-19: a mixed-methods study of the views of UK general practitioners and intensive care staff during the pandemic’s first wave. Castro-Avila, A.C, Jefferson, L; Dale, V and Bloor, K.

donate
Previous Page
Next Page